IETF – Your Voice for Essential Tremor

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ET – A tough thing for her to live with

Jill Bennett Osborne emailed the IETF in late November 2012 to inform us that her mother Rose Bennett Hildreth passed away.

?She was such a vibrant and beautiful lady that her essential tremor was indeed a tough thing for her to live with,? says Jill.

Jill’s mother passed away due to a number of reasons at the age of 84. Jill notes that the one thing that bothered her mother the most was essential tremor. ?She had lived with it for years but during her last month of living, it became more apparent,? says Jill. ?She was good at hiding it by holding her hands together and not eating certain foods when people were around to see her.?

Hiding symptoms of ET is a common reaction. Although the condition should not be considered a source of embarrassment, it can often be the cause of frustration over the lack of control, proper treatment, or a cure.

Receiving proper treatment, or even simply understanding and acknowledgement, especially from healthcare providers is important no matter the ailment, illness, or disability. In the case of Rose, Jill found that her mother’s healthcare providers didn’t know enough about ET.

?I noticed when she was in the hospital and then at home for her last two weeks with 24-hour care, that many health care professionals, including doctors, would ask her ?Do you always shake like this?’? says Jill. ?And I would respond with, ?Mom has essential tremor.’?

Unfortunately, the response would often be a look of “I’m sorry I don’t know what you’re talking about.”

This reaction is not an isolated occurrence. Far too many healthcare professionals do not have accurate, timely information about ET, a neurological condition that affects an estimated 10 million people in the U.S.

The IETF’s mission is to fund research to find the cause of essential tremor (ET) that leads to treatments and a cure, increase awareness, and provide educational materials, tools, and support for healthcare providers, the public, and those affected by ET. This mission is more than a statement; it is the IETF’s call to action to reach people with educational information so that people like Rose Bennett Hildreth can receive proper care and attention throughout life.

Jill, who kindly agreed to share her mother’s story, states, ?Thank you for your continued research and education of this condition to people. I noticed when people called her attention to it, it just got worse. I think it would be wonderful for you to share her story and she would be honored by that. I hope that this will help others who live with this on a daily basis. And again, to help educate all of those in the health care field that seem to need the knowledge.?